Hi Suzie here, I was first diagnosed with Af several years ago, and left hospital unsure how to proceed and without information. In May I was admitted to hospital in AF again as it wouldn't go back into sinus rhythm. They also told me I was in heart failure which frightened me at 52yrs didn't expect. After being signed off work for 2.5 months i saw Cardiologist who is referring me to Broadgreen for an ablation. It is very scary and I am really worried about risks for and against. Help anyone I have written numerous posts but seem to not get read.
Also work not happy as Gp signed me off for another month as I need this ablation i haven't even got to Broadgreen yet
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Suzieblue
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The first thing is that your health is very important, especially your heart. Wilirth reminding work about that. Without our hearts we are all a gonna!!!!
Search through past posts (including one within the last week). The search aspect is usually pretty good. .As I understand it and in past posts AF and other heart conditions are covered by the disability discrimination act. Many employers aren't aware of that including ones in the public sector!!!! People who work / worked for at least a couple of local authorities and at least a couple of health services have been in the same situation.
Unfinished don't have time to write more at the moment.
Hi Suzie and welcome to our forum. You will receive lots of good advice here, so don't worry that your posts won't be read on this site, they certainly will.
Now did they say you had heart failure or heart block? I remember telling people I had heart failure, but I got it wrong it was first degree heart block - sounds serious doesn't it, but guess what its not really. If you are on medication this can sometimes cause this to happen and my belief is that when you stop the medication it can go away.
I've had three ablations and although we get a little nervous before having one, afterwards we do wonder why we worried. Honestly they are nothing to worry about.
Re workplace not happy - Well tough for them, because you're not well! I decided I'd had enough of the stress of my job and after a particularly bad bout of AF and hospital stay decided I wasn't going back. I was lucky to be in receipt of two pensions, so I retired and managed to scrape by. Now I know you're not ready to do this but, trust me, it certainly wont be easy for them to dismiss you while you are off sick. You really don't need that worry right now, so try to put it from your head and relax - not easy I know!
Remember you are not alone, we are all here for you and understand your situation totally.
I know others on this forum will soon be responding to you.
Thanks for the hug I need one as feeling very low right now and I think part of it is some of my family say I have caused the AF myself. I know I'm, overweight which is why I am trying to lose it. Since my Mum died in 2013 of cancer I have struggled with a lot of things, she was rock. Re: heart failure they gave it a percentage and so I have been on low salt diet and reduced volume of water I drink.
This is a little blunt but sometime that my father said is so applicable. You are at where you are at. You can only move forwards and you can only look back to learn how to move forwards.
It is irrelevant whether you being over weight is the cause or the straw they broke the camel's back or maybe it would have happened anyway. The fact is that you have AF now and need to learn the best way to manage it and make the best of life within the limitations AF and the medicines impose.
Hi Suzieblue. I do hope we can reassure you a bit. This seems to be your first post with us AFers.
Yes, ablation sounds very scary and risks are certainly there but having said that, they are very small indeed (like one in 500) and the chances of success are far, far better, like 70%. Lots of us have grasped the nettle and been glad that we have done so. Most people say they are scared stiff and then afterwards say that it was not half as bad as they had expected. Many of us have gone back for more as it quite often doesn't work at the first attempt. It can make a big difference to one's life and free one from depending on medication to control AF.
There are a few expressions in the English language that I'd like to change and one is heart failure. It sounds awful and it doesn't mean what it seems to say. I wonder if doctors even think when they say 'You've got heart failure' just how nasty it might be to hear. Bob (our noble volunteer who may know even more about engines than he knows about AF) will tell me if it would be appropriate to liken it to pinking. An engine that pinks isn't perfect but it still goes. I don't think modern engines do pink actually, but I don't think it would be half as alarming to be told you have heart pinking. Not to be confused with pinking up which is a veterinary term!
Not entirely Rellim. I would say pinking is more like ectopics and no- modern engines don't because they have such sophisticated electronic control systems which prevent it. Heart failure actually means that your heart can't quite cope with the demands made on it all the time. Long term AF can bring on heart failure but this can be reversed if the AF is controlled. Blood tests will show an enzyme which tells the medics there is stress in the heart. Typical symptoms of HF are breathlessness and swollen ankles both of which I have but I don't have heart failure so you see it isn't simple yes or no answer.
Maybe HF would be likened to a faulty throttle mechanism. The engine is working fine but when you put your foot down to go up a hill you only get half power and slow right down. Since beta blocker do this as well it is sometime so hard to decide which symptoms are from the condition and which from the drugs.
BobD# I do and have had for a long time, breathlessness and oedema; but I have also been on beta blocker for over 10 years since a bleed in my eye. I didn't connect the two, but I didn't have AF back then I just had tests and meds for angina which they decided I didn't have in the end. If I try to climb stairs or keep up fast pace the throttle definitely sticks.
Thanks for replying Relim296 pinking does sound better, the level of oedema was frightening but I realize it was because my heart wasn't pumping properly.
My BP was being "controlled " by a calcium channel blocker which was what caused my oedema. A change to a different drug enabled me to loose about 1/2 stone in two weeks and get rid of the elephant legs.
Firstly you have only 2 posts to which you received replies logged so don't know what happened there? Maybe your other posts didn't get posted?
It is very unusual to not receive a reply to a post so if it does get posted - usually means no-one knows how or what to reply.
I am so sorry to hear about your AF & heart failure but from what I understand, although it sounds terrible, you can recover if the AF is successfully treated. I think Bob has covered that.
Peter makes a good point - you are were you are now so the only way is forward, looking back is not going to support you now so maybe start to look at what you would like from life now and then start working toward it - taking the first step is always the hardest,
I have had 2 ablations and no more AF so I am an advocate and would suggest you put ablation in the search posts and read some of them. It really is much easier than you would ever imagine and Broadgreen has an excellent reputation.
(As an aside I grew up looking out onto Broadgreen but now live in Devon, still a scouser at heart).
When you see the EP go prepared with questions so draw up a list - top of my list would be what is your success rate? Second would be what do you think my chances of the procedure being successful in my case would be?
Hello Suzieblue and welcome to the forum. You have much to cope with - the loss of your mother must be difficult when you could really do with her support. Big hug from me here too.
The most important thing is you and your health. Put that first and ignore the blame merchants in the family - we have AF because we have AF. Endof. How we deal with it is the key.
Regarding work, as others have said, you have rights and your employer has legal responsibilities. Try not to focus too much on your employer's unhappiness - that is their problem. Your doctor makes the decision whether you are fit to work or not - you look after your health.
Read as much as you can on the main AFA website at atrialfibrillation.org.uk and remember all of us are in the same boat and are here to support, help and answer questions.
Fintona# Thanks for that, I need some support and to know i can talk to people in same boat.Trying to be Positive but I do find it hard.Fighting for every heartbeat as BHF says.
Just to let you know the Disability Discrimination Act has been replaced by the Equality Act 2010 if you need to refer to it when discussing with your employer.
Suzie, forget about weight being a factor re your AF. I have never been overweight in my life and I've had an irregular heartbeat (now in persistent AF) for the past 35 years! I spent an agonising few weeks of research trying to find what I had done to cause my problem, until I got to grips with the fact that I hadn't done anything.....I just have AF.... and I will do all I can to help the situation (with the aid of the NHS, of course).
Clanmaggie#Sorry to hear that, have been investigated for nearly 20yrs with problems with my heart including breathlessness chest pains etc. But until episode 2 years ago I didn't know I had AF.The hospital didn't give me much information I was left in dark and rang BHF and Af association who sent me information so I knew what was happening. At present waiting for an ablation and have no idea how long I have to wait and I can't go to work.
Hey Suzie, I had the same worries when I had my ablation. I'm 45, have had AF for 5 years now, had two CardioVersions and an Ablation . Right now everything is controlled via bisoporol and flecainide. I'm a big guy but I cycle, mountain bike, walk everywhere. Yes I'm overweight but AF doesn't stop me . All you learn to do is work within your comfort zones . The point is you can do anything if you put your mind to it. I have a busy career but it's been adapted to work from home on bad days. I'm also a single dad to an autistic teenager so we have challenges between my moments and her meltdowns but we muddle through. AF doesn't mean life stops, it means you adapt it , to make the most of your life.. I was off work for 2 weeks with my ablation although I did have it done privately. Try to keep positive Suzie , I did change my job to be more of a desk job to make life easier as I used to travel a lot for work. Life is too short to be sad so make the most of it and enjoy it !! AF isn't the end of the world it's just an erratic blip on your life's journey
I am assuming that you are being paid statutory sick pay through your employer? If that is so then assuming that you are normally paying income tax then you will get a tax rebate back each month until you have used up all your cumulative tax free allowance. Also contact the DWP because depending on your circumstances and savings you may be entitled to additional payments. Then also contact citizens advice (so you get it looked at from two different angles. It is more straight forward than it used to be but not totally straight forward.
Obviously I don't know what you do not the physical or mental requirements / stress / etc. Is there something that you can do where you work that is easier on you in which case you could go back to the GP. When you get your consultant appointment phone up secretary (not the general appointments number on you letter for rearranging), explain your predicament and no pay and you may be able to get an earlier appointment.
Do you belong to a professional body or trade union in which case do they have hardship funds. Sometimes this is a payment, sometimes cover certain bills, sometimes a loan or combination. Also contact your local council to see re help for council tax.
I had the same situation. It's not easy but if you contact all of your bill providers and talk to them about what is going to happen, you will find most of them very understanding.. It seems hard but you need to focus on the positive of what could occur after the ablation. Citizens Advice are good in this situation as well .. Just don't be bullied into making payments for something that's a non essential debt when you cannot afford it .. Your life and happiness is worth so much more ..
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